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7 September 2020 at 4:27 pm #5352AnonymousInactive
I hope you are enjoying the website – it is worth taking some time to look at the wide range of information here to see what you can learn and benefit from.
If you are new to the Forum, this is a good place to start, and a good starting point would be to tell us a little bit about yourself, such as how long you have been a Carer for, and what your experiences have been, so that others can relate and learn from you too.
Deryck9 September 2020 at 5:24 pm #5457Katie PerryParticipant
I am new to the forum. My Father and I are the joint primary carers for my Mother. Five years ago she had a fall and head injury, which led to post concussive syndrome then 2 years ago, just as she was starting to feel better she had a massive seizure and a diagnosis of late onset temporal lobe epilepsy, and during the seizure she sustained 10 compression fracture in her spine. Again, just as she was recovering from this, she then had a stroke and fell back in March, 5 days into lockdown and broke her ankle.
The last five months have been so difficult, as I have been trying to work fulltime from home, around looking after my Mum. We all live together in the same household, which is great and w have had my Daughter home from uni during lockdown and that has been so good but she has now gone back and there is only me and my Dad. Mum’s ankle fracture has not healed so her mobility is very restricted and the longer this goes on, her strength is reducing, so she can hardly move for herself now. we are trying to get her to do the excercises but it can be difficult as she is suffering with extreme post stroke fatigue.
I find that sometimes I slip into ‘carer mode’ rather then ‘daughter mode’ if that makes sense, and then I feel awful as I think it must seem like I am being a bit bossy but I just need her to be safe. When she tries to get up on her own she usually has a fall and then her pain in the ankle is worse and I am really worried she will break another bone, so either me or my dad have to be with her, or near her, all the time, 24 hours a day.
Even though we have looked after Mum since her fall, it is only since the stroke that she has required more help as she could dress and wash herself before and was moderately independent when her pain was controlled with painkillers. I am worried about my Dad, who is in pain himself and on a waiting list for injections for a trapped nerve and 2 partially slipped discs. it would be great to hear from other carers who look after family after a stroke. Mum has quite bad memory, aphasia and cognition problems and it seems like she is getting weaker and doing things much slower. I can’t begin to understand how frustrating it must be for her, but I do feel sometimes like I am living in slow motion.
Also whenever I have feelings about how difficult it is I feel really guilty thinking it must be far worse for her. I guess this is probably normal.
Anyway, that is probably enough for now….
Katie15 September 2020 at 10:27 am #5494Karen ShearerParticipant
My name is Karen, and I’m a Carer Support Coordinator. I will be calling you later today to book in your Carers Assessment and we can discuss your concerns. I just wanted to say that it is perfectly normal to feel guilty at times, however you shouldn’t, as you and your father sound like you are doing an amazing job.
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